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#1 Johnc

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Posted 04 April 2013 - 04:35 AM

I will be visiting Dr. Talpaz next week for a second opinion. My current Onc is also a Leukemia Specialist but also specializes in BMT(which scares the he'll out of me but would be an Absolute last thing I would try). She is working with me on my request for  a lower dose but it may not be low enough in my opinion.

When folks get  a second opinion  do most of you let the doctors communicate with each other to get a compromise or do you go with the Onc that you align your views and what you think is the better of the two plans?  I just want to be prepared as I think their  opinions will differ and find out how many on this Bpard handle things that provide the best results for their situation.

Thoughts?

Johnc



#2 NotJack?

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Posted 04 April 2013 - 08:19 AM

Hey John,  my two oncs give me their separate opinions, and I decide which has the more compelling argument to my personal situation.  At times there is some disagreement, and so far, I have gone with the top CML doc exclusively.  That is not to say that I did not appreciate the input from my other onc, I might go with his recommendation next time.  They both seem to value the arrangement, and respect each other greatly.  Its the best of both worlds  when egos get set aside, and we all work as a team. All three of us gain a better understanding of where to go with my treatment, and why.  My top onc led the BMT team, but never has even mentioned employing that option while the TKIs are still an option.  I have no worries about his counsel.  Good luck, Dr Talpaz is a great second opinion!  Take care, Jack


Jack


#3 Trey

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Posted 04 April 2013 - 10:01 AM

Dr Talpaz is far better qualified than your current Onc.  There are levels of "specialists", and Dr Talpaz is in the top tier.



#4 CallMeLucky

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Posted 04 April 2013 - 10:14 AM

Dr. Talpaz is one of probably the top five CML specialists in the world, so in this case it would seem that if you have contradicting advice you should probably go with what Talpaz says.  It's not like Talpaz is not very well experienced with transplantation, if in the end a transplant is what is needed, it's not like Talpaz wouldn't know that or give the correct advice.

In my case when I went for another opinion from my doctor who was a very qualified CML specialist, my second opinion was very good friends with my onc, he said something along the lines of "I can talk Dr.X into this treatment plan".  Ultimately I decided to switch doctors since I didn't think it was in my best interest to be with a Dr that needed to be convinced of the treatment plan, I knew she didn't agree and even if she went along with it, it was going to be a problem.  In my case both doctors were at the same level of expertise, it was just that one had a very conservative and rigid philosophy and the other was easier to talk to and more willing to be flexible in the approach to treatment.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#5 Susan61

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Posted 04 April 2013 - 07:00 PM

Hi:  I always recommend second or even third opinions.  When my doctor retired, and I had to switch to another doctor it only took one office visit to know he was not up on treating CML.  I left him and went to a new doctor, who agreed with the whole protocol that my first Oncologist had.  I just never went back to the second one.  I also keep records of everything. I did not even have to request my records from the second doctor.  I brought everything with me to the third doctor, and she felt I had everything she needed. So we went from there.

    I tell everyone to make their own folder with every single test they get, so you can just pull it out when needed.

Susan



#6 lymphomajourney

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Posted 05 April 2013 - 06:26 AM

My situation is different - mantle cell lymphoma, treated successively with auto and allo stem cell transplants. I used second opinions as independent opinions on the proposed course of treatment, particularly with the more aggressive allo SCT. Fortunately, while the doctors laid out the risks somewhat differently, and had slightly different procedures, they were in fundamental agreement that the only option for someone in my situation was an allo SCT.

Hope this is helpful.

Andrew



#7 Johnc

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Posted 11 October 2013 - 07:32 PM

Dr. Talpaz is my hero

Most of the post I read many of you are responding well and targets (MMR) are met or darn close. I am very happy for everyone on the board who writes and shares their experience. I have not posted in some time because my situation never progressed in a positive way. It was 10 steps forward and 9 steps back.

Here is my story:

I was diagnosed on April 11, 2012 and have posted before and had to take three (3) drug breaks on Sprycel because of low platlets and low WBC. I went to a doctor at the Cleveland clinic and they did not want to reduce my dose below 50 mg but wanted to begin the process of a BMT. I was fortunate to fine two (2) sibling matches.

This Board has really educated me so I marched on to see Dr. Talpaz after seeing so many positive post, especially from TREY - Our Hero! I would have considered Dr. Cortes but the travel was a little to far.

My last PCR blood went from 100%(at diagnosis) (IS) to 2.34%. on February 5, 2013. After and during my 3rd drug break it went to April 11, 2013 to 8%(IS).

I went to Dr. Talpaz  in mid April 2013 while on my drug break because Cleveland Clinic wanted to move quicker on a BMT. Dr. Talpaz kept me off all medicine but began me on weekly Neupogen Shots. I was off Sprycel until mid May and was only on 20 mg every other day. I was very nervous and in my July appointment my PCR went up to 74%(IS) but my FISH went from 5% good cells to 70%. At the end of August when my FISH had a significant increase Dr. Talpaz then doubled the amount of my weekly shots to 34 ml of Neupogen which was a 100% increase from before.

During this period my wbc and platelets began to move up consistently. In early September Dr. Talpaz instructed me to take 20 mg for two days in a row and then off for one day. Just recently at the end of September he instructed me to take 20 mg of Sprycel daily.

As of this writing my platlets that use to be in the low 20 to 40k range are in the 130k range with my wbc at 7k where they use to be in the 1 to 2k range. I never felt good when my blood was at these levels.

I am heading to Dr. Talpaz next week in hopes that if I need to go to 40 mg  based on my good blood counts or better yet if my PCR comes down and the FISH hits a 100% good cells stay just stay on 20mg. I will also ask to discontinue the shots, they are no fun but my body has adapted to them over time. I qill report back.

I want to share this with everyone as there are many different "ways to skin" the cat and I want to personally thank Trey for recommending me to Dr. Talpaz.

Dr, Talpaz is such a gentle man, he will listen to you and answer your question, is very patient and won't push you out of your appointment even if it is for an extended time. Thanks also to his staff especially Darla who communicates within a couple hours after Dr. Talpaz reviews my weekly blood test. She provides an email on any course of action.

Johnc

Message was edited by: John



#8 Trey

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Posted 11 October 2013 - 08:22 PM

Shows how treatment in difficult cases can be more art than science.  Dr Talpaz is one of the very few CML artists. 



#9 Marathon

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Posted 12 October 2013 - 04:43 AM

From the other side of the ocean (most of you are from the US), to confirm how important is to have the feeling of being in good hands, specially when things are not going the right direction.

If things (no please !!!!)  start going south, I am sure I will follow advices on who are the best specialists on CML. Seems to me that all is a protocol, but we need that special advice from a real experienced doc to be able to stay in path.

I hope the moment does not come but if so, I will ask for details on how to get an appointment with these Masters.

Have a good weekend !!!!

M



#10 hannibellemo

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Posted 12 October 2013 - 08:20 AM

Johnc,

Thanks for sharing your story, and I'm so glad that things are looking up for you!  Many of us have had detours on the way to a response, that's why these boards exist. If it were easy no one would have anything to say and the posts would be so boring that interest would just dwindle away to nothing.

We all learn from everyone's experiences that are shared on this board!

I hope to hear continuing good reports from you and that you, also, become one of the "boring" responders with no reason to be on here other than to offer support to those who are just beginning this journey!

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#11 johnny99

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Posted 13 October 2013 - 02:49 AM

Johnc: Good to hear you are starting to tolerate the Sprycel, and thanks for sharing your story! It really gave me hope seeing that you had an even tougher time with low counts than me and still managed to get them under control.



#12 Johnc

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Posted 26 October 2013 - 08:05 PM

Good news from my appointment with Dr, Talpaz

40mg ever other day, 20 mg on the opposite day. The goal 40 mg each day, followed by weekly neupogen shots. The long term goal is 60 or 80 mg each day

Bad News, after 6 months on Neupogen, the script expired and the insurance rejected a new script so Dr. Talpaz has to fight the insurance company to get it re-instated. I will however get the injections at a local doctor each week. Go figure you can do that but they won't send them to you in the mail.

Took blood test for FISH and PCR, he uses FISH until we get to all good cells and then depends on PCR readings.

Good Article:

http://onlinelibrary....20285/abstract



#13 Tedsey

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Posted 26 October 2013 - 09:29 PM

Sorry about the insurance issues, but glad to hear things are heading in a positive direction for you.  I also thank you for sharing your story.  Like someone mentioned above, there are probably a few different ways to "skin a cat" with this CML thing.  And the more docs/researchers know, the closer they can get to fully controlling this CML monster, or better yet, finding a cure.

Keeping fingers crossed for great results on your next round of blood tests,

Tedsey



#14 Johnc

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Posted 27 February 2014 - 09:00 PM

I went to see Dr Talpaz last week and had a bmb

I am almost two years into CMl and have been on and off the TKI and taking Neupogen shots weekly for about 8 months. I am on 20 mg per day because my platllets keep crashing. My PCR has started at 100% want to 6% and back to 94% then down to 42%. what a roller coaster

lately my platlets are up to 140k range for a few weeks

I just got my bmb results back and the Dr wrote "Bone marrow shows no evidence of Leukemia which is excellent". I read into the report("No morphologic evidence  
of leukemia".) and compared them from two years ago.  I am a skeptic so I am waiting for the PCR and FISH test coming back. I responded to Dr. Talpaz on exactly what he means but don't think that would have been written if it wasn't true.

has this every happened to others with their bmb?

I will update the group in PCR and FISH soon but I can't believe what Dr. Talpaz did for me where the Cleveland clinic wanted me to have a BMT without question

johnc



#15 GerryL

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Posted 27 February 2014 - 11:11 PM

Hi John,

I've had a different situation where I've had two BMBs where they haven't been able to supply info on CML levels, done by different docs/collection methods, but it has still shown up in the blood. I did get to PCRU as well a few months later with blood tests..

I'm going to offer my congratulations on your results.



#16 Trey

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Posted 28 February 2014 - 09:44 AM

The BMB is the most accurate test of leukemic levels until CCyR is reached even though it is a small sample.  The PCR is actually an estimating process instead of an actual counting of leukemic cells.  You are now in CCyR, so your PCR should show a nice drop. 






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